One of my dearest friends, who I met in graduate school, was diagnosed with ALS mid 2011. She was 32 when the doctor told her that this terminal illness that typically impacts middle aged men would give her another three to five years with us.
There is no good way to process this. I read an article that says to pay attention to the way you communicate in the middle of illness and tragedy. The article says "comfort in" and "dump out": this means that it is completely inappropriate to emotionally dump on anyone closer to the chaos than you are. Dump outside the circle. I'm trying to adhere to that, while still being emotionally honest. I don't want to be the cheerful optimist for my friend--she sees right through that--and yet it's no good to wrap myself in melancholy. She has an outrageous sense of humor with a gallows tinge, and she is completely emotionally open and present. We still talk thoroughly about our lives, and yet, I have found no good way to say how sorry I am that she is dying. Instead, I try to do my best to just show up, though at every turn I am confronted with my own selfishness. Sometimes I do not want to answer her phone calls, because I want to pretend that the disease does not exist.
Even though I have been a witness to the progress of the disease-- first, by managing keys and zippers and knives when necessary and then putting on socks and then driving a wheelchair--I have been in denial. Tonight, I finally read--after two months of avoidance--the opening chapter to a memoir she is writing. I could sense her sitting by me telling me stories. I was engulfed by memories--wine and YouTube karaoke, thesis conferences, movie nights, date stories--all the minutia that makes up love. I can see her dancing eyes and her mischief and her energetic embrace of the absurd.
I am filled with the naive and impotent impulse to grab everyone I love and corral them somewhere safe. My virtual arms are wide and they reach across the globe.The challenge of the thin-skinned is feeling so piercingly the tenuousness the web of community. The three weird sisters of fate cutting and weaving breathe down my neck.
And I struggle with my own grief. This is not, after all, my disease. This is not my tragedy, and yet because it involves someone I love, it is. I do not know how to manage ethically, because I am not noble; I am coward.
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